Food and Rainbows!

One of Robbie's home therapist asked my advice. He is a one to one aid in school to a boy who is not eating his lunch. His mother has requested that he sit with the boy until he has eaten his gluten free peanut butter sandwich. I asked if he eats anything else. Apparently he does eat some of the other items in his lunch, but lately not the sandwich. He wasn't sure that sitting with the boy and forcing him to eat would be beneficial long term. A different situation had occurred for a classmate of Robbie's. His mother shared her frustration as her son would eat everything else in his lunchbox before eating his sandwich. She thought that was fine, however the in class aide would try to make him eat the sandwich first. It became an issue. This mother however wasn't sure why it became an issue. If he's eating his entire lunch why does it matter what order he eats it in?


I have been blessed with three children who eat. I say this because I do know some families where eating anything can be a challenge. This post is not to demean those situations in any way.
The first situation may be that the boy was tired of the gluten free peanut sandwich that was packed every day. Robbie used to eat left over macaroni and cheese or couscous from dinner the night before for lunch. He will no longer eat either one in school. It took me a few while to make the connection, but I started packing different things for lunch and problem solved. The second situation is slightly different. If the order in which a child eats his lunch does not concern the parents, than why does it matter? I never pack sandwiches because he doesn't like them. This may have helped us avoid situations regarding what is eaten first. Although I too do not care as long as he eats lunch.


Both situations had me thinking about Robbie's eating habits as of late. I'll be honest. I've been celebrating a bit. Robbie has been expanding his food choices. This may seem small because as I mentioned he has always been a good eater. He does not have issue with texture as many on the spectrum do. We are lucky. However he is very picky. Whether that is in part due to the Autism or a kid just being picky- who knows. He will now eat Taco's- or at least the shell- with chicken and ketchup. May sound gross to some but I think it's great. This past week he ate regular pasta with butter and parmesan cheese. For the last 4 years he has not eaten pasta unless it was macaroni and cheese out of the box. Preferably Annie's homegrown mac and cheese. Friday night we made pizza ourselves. Usually I order from the local pizza shop because he would never eat the pizza we made. Loves to make it- but would never eat it. Maybe I was lucky because it was a new crust I hadn't tried- which was really good. Robbie ate his entire pizza. (Lot's of peperoni and little bit of cheese.- the way he likes it.)
 Robbie has also decided he loves basketball.  Many mornings he asks to play and shows me how ne can dribble the ball. We recently found a rainbow colored basketball at 5below and I think in Robbie's mind he'd won the lottery. (He is a bit obsessed with rainbows. You'll see many in our home- out of legos, blocks, beads, crayons- whatever is available.) He has been playing after school with his therapists. Since his father is a basketball coach this really should not be shocking, yet it was. He's watched it for years and never shown much interest. It's like a light bulb went on. I am happy he has found something he loves, besides minecraft and movies.
I was explaining how excited I have been with these "new culinary experiences"  and his interest in basketball to my best friend.  She gets my dueling sarcasm and genuine joy out situations like these. For us it is constant small steps, or little pieces of the giant puzzle that is Autism and Robbie. Some days they seem to be a dark cloud over our heads and some days they are as beautiful as the giant rainbow on his wall. And that is the beauty of Robbie! We love you Robbie!

Miles of Hope- 5K to benefit Autism Speaks-.......Robbie is Ready!!!

http://www.courierpostonline.com/story/news/local/south-jersey/2015/03/26/south-jersey-moms-go-extra-mile-combat-autism/70495000/
Above is a link to an article that was in the Courier Post over the weekend discussing the upcoming 5K to benefit Autism Speaks. Robbie was so excited to see his picture in the paper!!




See the link below and please come out to support
Miles of Hope
5K Run/Walk
to benefit Autism Speaks


April 25th 8am
Vaughn Hall- Medford Lakes


https://runsignup.com/Race/NJ/MedfordLakes/MedfordLakesMilesofHope

Why my son, who has Autism, is a superhero..... for real

We all think our children are phenomenal. Of course they are. I am going to explain to you why my son is a superhero............. and many of classmates may be as well.
Spider-Man's five primary senses are above average perception, though not superhuman, as a result of his spider powers. This quote comes from Wikipedia, but it is exactly what I am referring to.


Vision- Robbie can literally pick out a needle in a haystack.  He sees the smallest details in the biggest pictures. Coming from parents who both have horrible vision- it is unbelievable.


Taste- Robbie could taste .025 ml of a medication in applesauce, ice cream or juice. His sense of taste is uncanny.


Touch- Robbie will comment that I have hurt him if I graze past. Yet many times he craves deep pressure.


Sound- Vacuum cleaners may make him put his hands to his ears, yet loud laughing or happy screams- he enjoys.


Sickness- when I am not feeling well, Robbie is usually by my side asking if I am ok.  Sometimes even before I realize that I do not feel ok.


All Superheroes have a weakness. For superman it's kryptonite. For Daredevil, who is blind, it is a lot of background noise. For the Flash it's actually running too fast. For the Human torch , it's not water, it's asbestos. Spiderman is not know to have any weaknesses, yet the common cold weakened his spider sense and gave the green goblin a distinct advantage.




What is Robbie's weakness or kryptonite? I think it may change of seasons. It is almost crazy as I track behavior and mood. We had thought it was change in routine and schedule that caused the behavioral issues. Now I think it may be weather.  Robbie has sensory processing issues and a heightened sensitivity to the environment around him. . For him, this has been the biggest challenge.  His occupational therapy  needs are constant. One morning session would not help enough. Two 30 minute sessions weekly in school would not help enough. Adjustments have been made and more sensory breaks are woven in throughout his day. He has also become more aware of when he needs them and will take them accordingly in his classroom.




At dinner last night with a group I refer to as "Superwomen"  of Autism moms, I hear stories of how one of Robbie's classmates has been learning multiple languages because he is fascinated with them. Yet his communication is still limited. It makes me wonder- how much knowledge has he been storing in his brain that is untapped? Another classmate uses a device to talk but is an incredibly fast runner. The only one who can catch him is the teacher- a true athlete- and runner. Other stories emerge of children hiding their faces under pillows or holding their ears and screaming in some sort of distress- all I can think is - what is their particular form of kryptonite. These children  could be so highly in tune with the environment that what they hear, feel, or smell is something we just can't. So many what if's or maybe,  that's why....  The discussion was unanimous that none of us think we will ever know what has caused our children to have autism. It is a puzzle. But as I ponder the why- there may be a day when someone literally saves your life....... and then flaps their hands, jumps up and down, says "EEEEEEEEEEEEEEEEE" or some scripting phrase in another language and runs away, at an incredible speed to the safety of their own bedroom. SOMEDAY :)

Unprompted Spontaneous Language

And the roller coaster of Autism goes up! As I have mentioned in prior blogs we have learned that after a stressful period comes progress. This weekend has been no different. While the balloon incident definitely threw us, the next day increased communication from Robbie and better listening from Mom and Dad occurred.
Sunday morning Robbie asked for a tub. He loves the water and spends as much time as he can in it. There is a sensory component with the pressure of the water surrounding his entire body. If you've see him at the lake in the summer , he is often chin deep - happy as a clam. ( Robbie would say- " No, I am not a clam, I am a boy..... LOL)
Lexi reminds us that Robbie had a tub the night before so he doesn't need one first thing in the morning. She also lets me know when his fingers have become wrinkly after he had has in the water for 20 minutes. The night before that was her sign to get out of the bath. I explain to Lexi that Robbie loves the water and it helps him in ways that are different than just getting clean. I also explain its a Sunday and there isn't a line for the bath- as there can be on a week night when 3 individual baths need to be drawn with some supervision for all 3. Robbie happily sits in the tub writing his name in shaving cream.
Sunday night, Robbie tells Rob he needs a hair cut. Whoa...... He has never asked for a hair cut. In fact , hair cuts usually start with some screaming, crying, and yelling "No don't cut my hair." Last night Robbie says he'd like his hair cut, but just around his ears- where it has gotten very long. He explains it has been bothering him. Awesome. He is communicating, and getting a hair cut- which he really needed!
Monday morning- Rob asks Robbie if he wants to take a shower. Robbie happily says yes. While getting the shower turned on he looks at his dad and says " You've got your red?." pointing to his Dad's shorts. "Yes Robbie, I have red shorts." Robbie replies "What's your favorite color?" Dad replies "It's green." Robbie says- "You like green? My favorite color is blue."
Unprompted spontaneous language. It's a beautiful thing. My wish coming true!

Robbie, I'm scared...........

Robbie, I'm scared. Robbie, you scared us.  I've written about hearing the phrase "Mommy, I'm scared" in the wee hours of the morning (1am, 2am, 3am) Friday night was one of those nights. Robbie is often plagued with anxiety.
Saturday night it is us who are plagued with anxiety and fear for our son. Besides anxiety, Robbie has many sensory issues. At times he is very sensitive to touch. He'll say " ouch- you hurt me" if you brush past him,gently grazing his arm. I'll think- I barely touched you. At times he wants to be touched lightly. He'll ask for tickles on his back or  a little hug. At other times he needs added pressure. A weighted blanket or a deep bear hug. Communication has improved ten fold yet there are still times when we don't know what he needs. He can be sensory seeking to regulate himself. As he approached me last night with the balloon ribbon wrapped tightly around his neck panic set in. At that point he wanted it removed and he could still breathe yet it was hard enough to remove safely that I yelled for Rob, as calmly as I could, and ran to get scissors.  Rob removed the ribbon and we both looked at each other, tears in our eyes remembering an incident a few years prior. Robbie had climbed onto a built in desk in the playroom. He had wrapped the cord to the blinds around his neck and gotten stuck. Again he was not at the point where he couldn't breathe but it was extremely scary. Here years later, just as I have been commenting on how much more control we have with Robbie's sensory issues, it has happened again.
To be perfectly clear, Robbie did not want to hurt himself. He may have had the sensation of " spiders crawling on him" as he tells me sometimes. He may have needed a really tight squeeze from head to toe. We don't really know.
To be perfectly clear, we were all right there. Rob and I had just finished watching a movie in our family room and all 3 kids had been playing in the kitchen. Our house has that fairly open concept and there are many views from the family room to the kitchen. I could hear them. Most of the time I could see them. My attention gravitating between the movie and Timmy , the 19th month old toddler. Yet never did I expect the need to keep that close of an eye on my almost 9 year old.
After the fear subsided a bit, I think there may have been a bit of yelling. Rob explaining to Robbie that he can't do that. It is dangerous. It's a bit of a blur.  After receiving the scissors back from Rob, I froze. I remember clenching them tightly in my hand so the sharp ends were safely hidden from the other children.
Robbie ran to his room. He was upset. This was not the first time he'd run to his room today. That is how he handles being disciplined or hearing something he disagreed with. He is, after all, almost nine years old. Rob went up after him a few minutes later. I put the scissors back into the cabinet where we keep them hidden so Robbie doesn't cut  his own hair, as he's done one too many times. I also went upstairs to check on Robbie. Rob was exiting his room as I entered and I noticed it felt cold but dismissed it until Rob explained Robbie had opened his window all the way up. The screen is not childproof, the warning written right on it. His bed sits up against the window. Again a situation that could have been disastrous, but thankfully was caught in time. As I curled up with Robbie I said " I'm not sure what to do"  to Rob, referring to the window incident. Rob mentioned screwing the windows shut. Maybe we'll rearrange his furniture again, was my thought, but we'll figure it out tomorrow. I held Robbie extra tight. I looked at him, wiping the tears from his eyes and said  "Robbie you scared me. You scared us. We love you. You can't wrap anything around your neck. It's dangerous."  We laid their for a few minutes and discussed watching his favorite movie , Big Hero 6 on the "big tv, downstairs." I didn't want him out of sight as I prepared dinner for the family. While downstairs he pointed to his Big Hero 6 balloon that had floated to the ceiling asking if he could have it. I told him we would take the string off it but he could hold it. He put his hands to his neck and said " sorry mommy, I love you."
I love you too Robbie. I was scared. I'm not always sure what to do. Please try to tell me what you need so I can help you.
As I wipe the tears from my own eyes, that is my wish and my hope. Robbie will be able to communicate his needs. He will be able to self regulate, safely and appropriately. He will have the ability to control his stimming behaviors in public. He will be happy. He will be safe. He will always feel loved.

Autism Reversed...........................nope

I had coffee this morning with a coworker and friend from many lifetimes ago. The pre marriage and pre children era. While we were catching up on each lives- kids, marriage, divorce, many career moves- she mentioned a friend who had a child at the same time she did. This friend's son had a diagnosis of autism spectrum disorder. However this friend through early intervention had reversed the diagnosis.
I felt my body tense. My teeth clenched. I bit my tongue for a minute. I had just mentioned that Robbie was doing well a few minutes prior. I took a breathe. She didn't realize the effect that statement had on me. I explained my position.
There is no evidence that Autism can be reversed. There is no evidence that Autism can be cured.  I believe that some children can learn how to handle situations and their own internal struggles to manage symptoms. I believe that many of those put into the umbrella of Autism Spectrum disorder may not have Autism. I believe many may have other issues such as food allergies or sensory issues. However many on the Autism Spectrum have food allergies/ sensitivities and sensory issues so it can be a difficult thing to define. I don't think we'll ever truly know what causes Autism. It is a puzzle with many pieces as the logo shows.
And yes,  Robbie is doing really well- for Robbie. As his teacher said during our conference today when I asked- as I do at every conference- "How does Robbie stack up academically compared to his neuro-typical peers?" Her response " He is exactly where Robbie should be. He has made a lot of progress over the last 3 years." Academically he is somewhere around a first grade level. Still, he has Autism spectrum disorder. He struggles with stimming behaviors and focus. Yet he is advancing and improving. He is learning some self regulation behaviors. He is becoming more social. He is participating in games club- playing Uno with 2 fourth grade girls. ( He loves the girls.) He has a buddy named Danny that he plays Minecraft with at the end of every day. He loves school and his routine. He is happy. He is loving. He is Robbie. He is my son and I am proud of him!

I've got you...............

Anxiety is a huge hurtle for many of those on the spectrum. Robbie is definitely no exception. We have tried many anti anxiety medications- none of which seem to help. Late last night after being woken again to "Mommy I'm scared" and responding with a big hug and the reassurance that I am there and I've got him, I began to write this blog in my head- as I do many late nights.  The new medication we have been giving Robbie- he won't take. We have tried liquid- mixing with apple sauce and even ice cream. He seems to notice it- and then pushes it away. We've tried tablet form- crushing it into juice with his other medication. He will not drink it. He points to the medications bottle and says- "No that one."- even when he doesn't see me put it in his apple juice. Amazing sense of taste.
As I contemplate the phone conversation I will have with his pediatric neurological nurse practioner, I open my emails. There it is, the Autism blog that I read religiously. The topic is anxiety. It explains through the voice of someone on the spectrum how much anxiety they feel every single day, from the moment they wake in the morning, even in their own homes. It also talks about the tools they have developed to handle the anxiety- each one unique.  Perspective.
"Hugga Me." "Take a deep breathe" These phrases I hear at least 30 times a day- or more. It can become cumbersome. When you are cooking dinner, changing a diaper or helping a 6 year with her homework (which by the way can be really confusing these days). Stopping to give a hug, make eye contact and take a deep breathe seems like a lot. Especially if it's the 25th time in the last 15 minutes. Robbie's therapist thinks it has become an OCD behavior just as much as a coping mechanism. But it is a strategy he has developed- with our help. At times he will also tell me he needs a squeeze. On the flip side sometimes he will tell me he does not want to be touched or does not want to talk. Progress!
Nighttime has always been a challenge in our home. Robbie will not sleep by himself. The routine goes- someone lays with him until he falls asleep. Then we leave to go to our own bed. A few hour later he will come find one of us- usually me. Many nights he'll say "Mommy I'm scared." My reply is and will always be the same  " I'm right here Robbie. I've got you."